Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘illness’

Oromandibular Dystonia & Communication

 

In 2012 one of the first symptoms I developed was severe Oromandibular Dystonia. This meant that my jaw, mouth and tongue go into painful, and often extreme spasms. On these occasions I struggle to speak; this can be due to several factors such as: my tongue spasming and making it impossible to talk, the jaw spasm itself, especially when dislocated, making it impossible; or it is simply too painful to do so. I often attempt to try and talk through the spasm but this can aggravate it.

Trying to communicate during these episodes is difficult, even if I manage to successfully make a noise, what I am attempting to say may not be clear. In recent weeks, since the birth of my baby, I had been trying to think of ways around this. Writing it down is one option, however, I find physically writing very painful and often dislocate when doing so. Instead my partner and I have decided to learn British Sign Language; we’re incorporating baby sign language into this too so that Stefan, when old enough, will understand as well.

We’re off to a great start and enjoying this venture. I’m finding that I feel far more settled knowing that I’ll be able to communicate clearly, even on bad days. As someone who is quite the chatterbox, this is important to me.Image result for BSL

Advertisements

Making The Most Of This Life One Spoon At A Time

My list of chronic conditions is an ever growing one; Dystonia, EDS Type 3, Non-Epileptic Seizures, Postural Hypotension and more! The list of hospital appointments is just as long. As I was diagnosed with each one I felt very much as if I were being forced to pause and take a step back in life. Almost as if I had no choice but to fail at achieving my goals. That may seem over dramatic, but it was a very real, very overwhelming emotion. Learning to accept life as spoonie was and still is a challenge. As I have mentioned before I have developed an attitude of watch me achieve everything you tell me that I won’t be able to. I shall achieve and aspire to all my dreams.

When I was exploring signing with my publisher I noticed that in their facts and questions page that they recommended if you were ill, waiting until you had recovered before going down this publishing path, because it is hard and a lot of work. Now obviously this is referring to recoverable conditions, hence why I skipped over it.  For my novel to be published I have to achieve 250 preorders, otherwise it won’t be able to go ahead (https://www.britainsnextbestseller.com/beta//books/?id=55). So for the next six weeks I have to put a lot of work into advertising and self-promotion via social media. Self-promotion may sound like an easy task but when one eye isn’t working and your body is dodgy anyway you tire easily. I know many of you know the feeling. This is when I adore Facebooks scheduled post function, it’s fantastic for when I need a quick break.

The next six weeks are going to be manic, and nerve wracking. However, it’s also exciting. I’m keeping my fingers crossed that I can achieve, despite everything , and manage to hit the 250 requirement! If you are a love of fantasy then you can order my debut novel here https://www.britainsnextbestseller.com/beta//books/?id=55

thumbnail_Regan Final Cover (2)

Little Things

The last week and a bit I have had a bad cold, which would normally be fine but as I have mentioned before Dystonia tends not to react well with other illness even if they are just small things like colds. This has resulted in a week full of a variety of spasms and a handful of pain triggered non epileptic seizures. My jaw has tremored quite a lot, I can only presume that the pressure in my sinus area has aggravated it and this is why it has played up more than normal. This in particular has caused the most pain as often my tongue gets bitten in the process.

In spite of feeling under the weather and my Dystonia alien being more mischievous than usual I managed to sit outside the house and enjoy the sunshine. This may sound rather simple, but it involves quite a maneuvering process as our house is not very wheelchair friendly. I normally don’t try to get out the house unless I am actually going somewhere as its hard to do and rather painful.To actually have achieved this without ending up in a hospital A&E department was extremely satisfying. I love being out in the sun, even if it is just for 20 minutes, it’s a nice change from being inside. Even though it’s a very simple achievement it is one that I am celebrating.

Recovery & Sensation Overload

It never fails to amaze me just how long my body takes to recover from illnesses and accidents these days. Pre-Dystonia I was one of the those people who always had some of thing going on be it sinusitis or a broken bone, but I always bounced back. I fell and ended up in the hospital a week and a bit ago, and yet I still don’t feel back to my usual dysfunctional self.

Many Dystonia sufferers have informed me if they get an infection or have an accident it takes them longer than most to get back to their selves again. So I know I’m not alone, but its irritating. I’m still sore, tired and my spasms and paralysis are being triggered more than usual. I know I sound grumpy! I do not mean to, but lack of sleep and some new sensations in my legs have set my teeth on edge. At least I know I shall sleep tonight after todays Reflexology session.

A couple of days ago this new sensation hit my legs (knee down). It’s extremely hard to put it into words exactly what it feels like. It sort of feels like sharp pins and needles mixed in with a numbing sensation. I try my best to distract myself but the sensation is rather uncomfortable. Part of me wishes that it would hurt enough that my brain would disconnect from my legs so I that I would not be able to feel it just for a little while.

On a far more positive note I would like to thank the lovely people who have nominated my blog and Facebook page for a WEGO health activist award. It is extremely touching and uplifting! I have had a number of people ask me how to go about nominating me, I put it on my twitter and Facebook page, but for those who have not seen it, here is the link http://awards.wegohealth.com/ .

Short Term Goals

As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.

I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.

There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!

ImageI know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!

 

Finding My Feet

So after a few days of feeling a bit rough due to a viral infection, I am finally feeling more myself. I try to avoid picking up any illness as much as possible as when I get a bug my Dystonia acts up. It is like my little Dystonia alien waits until I’m feeling under whether to kick it up a few notches and go “Haha, so you want to rest? Well I’m going to distort both your legs, try to rest now!”. My alien really is a pain.

I finally feel like I am beginning to find my feet and learn to live life alongside Dystonia. I have accepted that I can’t live life with it in the background because it disrupts things too much, but I can live alongside it, and ignore it as much as I can. I kept my life on hold for a year, and now I’ve taken it off pause and from next Thursday I am shall be studying again.

In life people define themselves by their achievements and what they have done. I was considering this the other day and trying to figure out what I would define myself as/by. My thoughts flicked from Dystonia advocate, fundraiser, Author (My novel is almost finished), and reflexologist (when I qualify). It took awhile before I realised I didn’t have to choose just one, I can choose them all, as each one of them makes me proud. This last year I could have sat at home feeling sorry for myself doing nothing, instead I decided to try to educate the world on Dystonia – an ongoing task, fundraising for The Dystonia Society (I have raised over £1000 so far), started and almost finished my first novel, and found myself a new career path. I am proud of me!

Tomorrow I am attending a craft fair, where half of what is raised will be given to a Dystonia charity. I am rather looking forward to this. I like to Crochet so it shall be interesting to browse whilst helping raise awareness for Dystonia.

I saw this quote below, which has been taken from one of my favourite Disney films. For me it rings true. The path I am now on is by no means easy, and I struggle often, however it will lead me to where I need to be.

 

Exhaustion

My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.

My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.

Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.

I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.

I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.

 

Rare Conditions, Doctors and Reflexology

Since I posted my blog post about Lyme Disease and Dystonia I have heard from a variety of people who have Dystonia caused by Lyme Disease or have both Dystonia and Lyme Disease. It has been extremely interesting reading people experiences of the two conditions. What has shocked me is how common this ‘rare’ disease seems to be!

I was doing some research on the two conditions earlier today when I stumbled across a blog written by a Lyme sufferer. She, like so may Dystonia sufferers do, has had to fight and battle against the NHS for treatment. Again she unfortunately has had the same experience that many Dystonia sufferers do in that a neurologist misdiagnosed her as having a ‘Functional Movement Disorder’. The more I read about these supposedly rare conditions the more it seems that the moment a doctor feels a little bit out of their depth they slap the label Functional on to their patient without listening and without further testing. From what I have read this often causes sufferers to question themselves! Whilst I understand that some people must have Functional disorders, many people don’t and are wrongly labelled as so, which causes problems when it comes to receiving correct treatment. It is frankly disgusting.

I came across an article earlier today which listed the neurological symptoms of late stage Lyme Disease and I ticked all but one box. Which has raised my hopes just that little bit more, that I may have found the cause to my Dystonia. It even offers a bit of hope that one day with treatment I may be lucky enough to have some improvement.

943011_159809994193903_317444151_n

Today I have felt rather under the weather, with my spasms being completely out of control. This has left me feeling exhausted and craving sleep. I have unwillingly refused to let myself sleep all day in the hope that I will manage to get a decent nights sleep tonight.

Yesterday I had my second reflexology session which was once again heavenly. It left me extremely relaxed and sleepy. I managed to get 12 hours sleep which was very much-needed. I am arranging for my next session to be done in the evening so that afterwards I can snuggle straight into bed and go to sleep. My reflexologist was hopefully that if we did an evening session so I could go to sleep afterwards then the benefits of the session may last a few days longer, which would be fantastic!

I cannot wait for my next session.

 

Illness and Inspiration

Over the last week I have not been well. My seizures have increased to the point that one night I seized from 12am till 6am, my body was spasming constantly and I was feeling really under the weather. The last three days I have had a temperature along with a sickness bug, so have spent the days in bed resting. As I have mentioned before Dystonia does not respond well when the body has an infection/bug, for me this means it acts up a lot. I have put this last week of bad spasms and seizures down to my body fighting off the bug and then succumbing to it.

Today whilst reading through some material on the Dystonia Society’s website I came across a section on Dystonic Storms/attacks and it has really got me wondering if my ‘new’ Non Epileptic Seizures are actually not Non Epileptic attacks and Dystonic Storms instead. In my ‘new’ type of seizures I am completely conscious  however I am unable to communicate verbally, sometimes I may be able to do this via twitching a finger or blinking my eyelids, other times I am unable to communicate in any form, which is terrifying! The Dystonia Society describe Dystonic Storms as :

episodes of a rare condition called status dystonicus where people develop frequent and intense episodes of severe generalised dystonia. A single episode of this severe dystonia may be referred to as a ‘ Dystonic storm’ or ‘ Dystonic attack’. They usually occur in individuals who already have dystonia affecting a lot of the body…During an attack people do not lose consciousness  and are completely aware of their surroundings but they may not be able to communicate to others as the muscles of the face and larynx are often involved. “

Naturally when I next see my consultant – which shall hopefully be soon – I shall put this to him and get his thoughts on the matter. – if you would like to read more on Dystonic Storms or Dystonia in general then please visit the Dystonia Society’s website http://www.dystonia.org.uk/index.php .

I found this picture earlier on today and it inspired me.

I am not going to have a perfect day everyday, and some days I am going to struggle to find the silver lining. However something good happens everyday, it may a day from hell, but if I woken up that day and I am alive, well that is fantastic and I am going to be grateful for it. There is no point in dwelling on the negatives in life.

So I am going to ignore my spasms and seizures, force my spasming face into a smile and carry on.

It is just the beginning…

I found this picture earlier on today, and felt that it would be appropriate to share it with you all. Yesterday I was rather down in the dumps due to having a bug for a few days and my Dystonia was playing up big time, then I got emotional about all the changes it had made to my life. This picture really got me thinking about the situation I have found myself in.

Dystonia is life changing! I am just at the beginning of a life long road and it is going to take time to adjust to everything. However just because parts of my life are no longer the same does not mean that it is all over and that it is time to give up. I need to recognise and accept that I am going to have down days now and then, where I grieve for the parts of my life I have no longer have. Yet at the same time I need to recognise the amazing things that have happened to me since the Dystonia hit me, such as the people I am in touch with, going back to riding, etc. If I did not have Dystonia then I would not have set myself a new life goal, I would never have even thought about aiming to compete at the Paralympics, but now that is something I strive to do.

It is going to be a long journey, and the beginning is always the hardest part, but you never know what is waiting for you round the corner. You only live once, you need to make the most of what you have!

 

Tag Cloud